A couple who noticed their newborn ‘snoring’ discovered the sound was actually caused by a rare heart defect.
Charlotte Lake, 23, and her fiancé Nathanael Guide welcomed baby Ava-Rose on June 25.
The couple, from Annan, Scotland, quickly spotted that she was making snoring sounds when she was breathing, even when she wasn’t asleep.
Ava was also sleeping more than usual for a newborn baby, which her parents put down to her being a ‘great sleeper’. But she was also not gaining weight.
After raising concerns with their midwife, Ava was taken to hospital where she was diagnosed with a hole in her heart.
Charlotte Lake and her fiancé Nathanael Guide welcomed baby Ava-Rose on June 25, but a few weeks later became concerned at her constant sleeping and snoring
At just one week old (pictured) Ava was sleeping more than is typical and struggling to gain weight
She underwent life-saving open heart surgery at just three months old and is now ‘back to being a normal, healthy baby’.
Her parents are eager to share their story in the hopes of raising awareness of the signs of heart defects in babies.
‘I had said when she was born that she sounded funny — like she was bunged up with the cold,’ said Ms Lake.
‘Doctors thought it was normal, and they told me she would be fine.
‘As time went on, it seemed like she was getting worse.’
On July 4, just nine days after Ava was born, Ms Lake told their midwife that Ava’s breathing was strange.
Tests showed her breathing and heartrate were double what was normal, meaning they were dangerously high.
WHAT IS CONGENITAL HEART DISEASE?
Congenital heart disease (CHD) is a general term for a range of birth defects that affect how the heart works.
CHD is one of the most common types of birth defect, affecting almost 1 in 100 babies born in the UK and US.
In most cases, no obvious cause of congenital heart disease is identified. But Down’s syndrome, the mother having certain infections such as rubella or taking medications such as statins, are all known to increase the risk of the condition.
Some of the common defects include:
- Septal defects – where there’s a hole between 2 of the heart’s chambers (commonly referred to as a ‘hole in the heart’)
- Coarctation of the aorta – where the main large artery of the body, called the aorta, is narrower than normal
- Pulmonary valve stenosis – where the pulmonary valve, which controls the flow of blood out of the lower right chamber of the heart to the lungs, is narrower than normal
- Transposition of the great arteries – where the pulmonary and aortic valves and the arteries they’re connected to have swapped positions
- Underdeveloped heart – where part of the heart doesn’t develop properly making it difficult for it to pump enough blood around the body or lungs
- Rapid heartbeat
- Rapid breathing
- Swelling of the legs, tummy or around the eyes
- Extreme tiredness and fatigue
- A blue tinge to the skin or lips (cyanosis)
- Tiredness and rapid breathing when a baby is feeding
Within five minutes the midwife had called the paediatric team in Dumfries and an ambulance arrived.
At first, Ava’s symptoms puzzled hospital medics. They thought she might have an infection in her lungs, or pneumonia.
After several tests, staff determined that Ava had a heart defect, urgently sending her to Glasgow‘s Royal Hospital for Children.
‘Doctors eventually said that it seemed like she had a heart murmur. From that point, they sent another ambulance to take us to Glasgow, and I went with her’, said Ms Lake.
Tests carried out on July 6 revealed that Ava had a hole in her heart — a life-threatening heart defect that can cause fast breathing and breathlessness in babies.
And her aorta — the largest artery in the body that carries blood from the heart to the circulatory system — was connected to the wrong place.
As a result, her heart struggled to pump blood around her body, making it difficult for her to breathe.
Congenital heart disease (CHD) — birth defects that affect the way the heart works — is one of the most common types of birth defect, affecting almost 1 in 100 babies born in the UK and US.
Symptoms include a rapid heartbeat, rapid breathing, extreme tiredness, a blue tinge to the skin or lips and swelling of the legs, tummy or around the eyes, the NHS says.
The pair thought they were ‘just blessed with a great sleeper’.
But after her diagnosis, they realised that Ava was ‘exhausted’.
After Ava was diagnosed, her weight had to be increased before she could undergo life-saving surgery.
Ms Lake said: ‘Doctors had asked if she was quite sleepy, and I’d said yes. I thought it was a normal newborn thing — but Ava didn’t really wake up during the night like a ‘normal’ newborn.’
She added: ‘I was just trying to process that my tiny little newborn — who wasn’t even two weeks old – would need heart surgery.
‘We were struggling to get her to gain weight and she wasn’t keeping anything down, so she ended up being put on a feeding tube.’
Eventually, after being on a feeding tube for about six weeks, doctors told the couple during a check-up on August 18 that Ava was ready for surgery.
Ms Lake said: ‘It got to a point before surgery where she was maybe awake for under six hours out of the day.
‘Her heart was working so much harder than any other baby just to keep her alive.’
She was then scheduled for open heart surgery on October 6 to repair the heart defect.
Ava pictured in hospital for her open heart surgery. Ms lake said ‘putting her to sleep was the most traumatic part’ and she feared it could be the last time they saw her
The operation on Ava’s heart was a success and Ava made a speedy recovery. Now the couple are raising money for the Glasgow Children’s Hospital Charity and for the Ronald McDonald House in Glasgow
The couple knew ‘there was no guarantee that she would make it’ through surgery, they also felt there was ‘no other choice’.
Medics had said Ava wouldn’t survive to see school if the operation didn’t go ahead.
Ms Lake said: ‘Putting her to sleep was the most traumatic part — she was crying and fighting the mask, trying to push it off her face.
‘She was really upset and that was heartbreaking enough.’
She added: ‘The anaesthetic took hold, and she just went limp — that broke my heart.
‘We had to leave and say goodbye, knowing that that might be the last time we ever saw her. What if something went wrong?
‘The doctors were prepared for every eventuality, but we still had to leave Ava in other people’s hands. We didn’t know if she was going to make it out alive.’
The operation on Ava’s heart was a success — with Ava making a speedy recovery, she was able to return home just eight days after the surgery.
‘Everything went well — but the hole was larger than they expected,’ said Ms Lake.
‘A baby’s heart is tiny at that stage — I can’t imagine how much of her heart was taken up by this hole.
‘Now, she’s doing amazing. She’s slowly gaining weight — now she can take a bottle again.
‘Apart from her medication and hospital appointments, she’s back to being a normal, healthy baby.’
The family are now raising funds, via a GoFundMe page, for the Glasgow Children’s Hospital Charity and for the Ronald McDonald House in Glasgow.